Neurofibromatosis, NF, NF1, NF2, Green Ribbon Tie

My daughter was diagnosed in November 2010 with NF1 at the age of 6. She was born with a few Café au lait spots but I always thought they were birth marks. She was being examined by her paediatrician for school, when she became interested in the coffee coloured spots. She asked a few questions and I told her she had developed more since her birth but the thought had never crossed my mind they would be an indication of a disorder. She casually mentioned that it could be Neurofibromatosis. I had never heard of NF before. I had to ask her multiple times to pronounce it and when she told us about tumours under the skin, I had to make myself not go into panic mode. I tried for days not to look it up online and wait patiently for a referral to the genetics centre in the next state.... My curiosity got the best of me and I typed in Neurofibromatosis into Google. What I saw next kept me awake all night and I cried and asked prayers from friends. I couldn't believe that this disorder was not well known and I had never heard of it before! It's been nearly 2 years since her paediatrician saw her and the Weisskopf Centre diagnosed her with segmented NF1. I have already seen a big increase in the number of spots on her body and attempting to find out if the tiny bumps I've seen forming are tumours.... I know the severity of the disorder ranges drastically and the rarity of them becoming cancerous... My heart hurts and my brain keeps asking, "What if?" The unknown I think is the hardest. Yes we know she has NF now. How severe will it get? Will she develop tumours in her eyes, brain, ears or body? Will she be in pain? Will she be that rare case that turns cancerous? These things I try not to dwell on but there are nights every now and then, when they just won't leave me alone. There are those that are dealing with severe cases of NF and I pray for a cure one day. To at least find a way to ease the suffering of so many with debilitating symptoms. This if for Hatti's hope and everyone else's hope for a cure one day.♥